1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

I Don't Know What To Do Next...................

Discussion in 'I care for a person with dementia' started by Bassetlaw Badge, Oct 27, 2015.

  1. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Evening TP friends,

    It's been a while since I posted on here - not really got much to say, just 'getting on with things' as we all do.

    But over this week (half term, so a bit of time to breathe) I've begun asking myself a few questions:

    What does dad do when I'm not there?
    Is he ok on his own?
    What options do I have if I'm concerned?

    I don't know where to turn for advice on these questions. We started the whole 'official' stuff back in February this year and other than a diagnosis in June and 'phone call from AS in August, I'm still waiting for any kind of response, help or advice from SS. Filled in a form and then, well, nothing. Just got told about their 'huge backlog'.

    I'm basically at the point now where my day starts at 5am with work, then dads for breakfast, then school run, then back to dads for an hour to be with him, then home for an hour to do housework, then work for a couple of hours, then back to dads, then school run, back to dads for an hour before tea, home for tea, son to bed, housework, bed around 10pm. Some days when my husband is working away I just stay at dads as it's easiest for me that way. I'm finding it pretty exhausting but it's now a routine.

    My concern is that dad isn't coping well in some ways. He eats, sleeps, cleans (both himself and the house!) and the dvla says he can drive. BUT he seems to spend most of his time I'm away from him coming to and from our homes. I watch him pull up outside and often just look and drive away. I call his house ten minutes later 'I thought you weren't in, the place looked deserted' he always says. It's like he has no concept that he only saw me 20 minutes ago. If he has something he wants to tell me he jumps in his car and drives over. I can only assume he does the same while I'm at work too.

    He's also obsessed with applying for a bus pass. Sometimes I manage to intervene and tell him 'I'll sort this for you' but I know at least two have got through as he now has a replacement to an original. He doesn't use buses and if you ask him, he doesn't think he's got a bus pass. And then tries to apply for another. We've discussed not doing any official papers without me to no avail............

    Should this concern me? I'm worried about his obvious confusion over where I am. What can I do? Do I need to be with him more? Does he need 'more'? Perhaps I need to get someone in for a couple of hours a day (we have no other family)? I've tried to convince him to get a whiteboard in his kitchen for me to write on each morning to help but he seems very reluctant to use any aids at all. We currently have changed nothing since his diagnosis and I have had numerous conversations with him suggesting we need to put some things in place to help but still no luck. I wish he wasn't on his own, but I need to work nor does he want to live with us (his is too small for us to move in). I don't know what to do for the best.

    Crikey this is a long post! Got a lot going around my head at the moment. So much so I just want to sit on the sofa and do nothing!!!!!

    x
     
  2. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    I'm not surprised you want to sit down and do nothing! It's known as having a rest which you obviously need. You sound in a similar situation to me, juggling children and parents needs and it's hard work!

    Does your Dad like the telephone or is that why he drives over? It sounds like he is getting confused and also maybe lonely. Can he attend a day centre, or even visit the British legion to have a pint and a chat. He may need some stimulation or company.
    Does he belong to any clubs? I notice he still cleans his house you say, does he manage to do everything or could you get someone in to help him out even just once a week, or to take him food shopping maybe? You could say a friend of yours needs a job so he'd be helping her out.

    Is there a local bus for older people that runs on a taxi basis from door to door but is cheaper, although I know you need to book it before you use it, so that means you'd have to sort that out but if he did that same day every week it may help as routine is good. Maybe a befriender to visit would help too and give you a break.

    Is he friends with a neighbour, maybe speak to them and see if they can keep each other company, easier said than done I know. Other than you popping over to him and going back and for, how about twice a week he comes back to yours and has tea with you all and then you take him home.

    Hope it helps, let us know how it goes and enjoy the half term. You feel like you are being disloyal to whoever you aren't with and split in two don't you?
     
  3. 2jays

    2jays Registered User

    Jun 4, 2010
    11,594
    West Midlands
    Well.... Sit on the sofa and do nothing

    It's still going to be there tomorrow, but at least you will have had a bit of YOU time

    Sounds like you need some help :rolleyes: :)

    I could Suggest day care? But I know how difficult that is to arrange, for dad to agree, for him to go..... But it does sound to me like it might help you both.

    Contact Alzheimer's support in your area. The can have a fountain of knowledge for you.

    As to Social Services.... You need to become a nagging Nancy.... (Sorry to anyone called Nancy who doesn't nag... It's my grandmothers saying)
    If you don't keep shouting in increasing crescendo, they can't/won't hear you. They are especially deaf if the words "self funding" is the case. Self finding, sorry funding, is exactly that. You have to find out by yourself what you are entitled to

    By law - you should have a carers assessment and dad should have a needs assessment.

    In my opinion and experience, you only get these if finances have to be found by SS. Still waiting for my carers assessment that I asked for 4 years ago, when mum was still living at home. Was told as mum was self funding, others were a priority

    Chins up. Enjoy your sofa time xxxxx


    Sent from my iPhone using Talking Point
     
  4. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Thank you!

    You both had pretty much said what I was thinking about doing...............

    Love the fact that you could tell from my post that we're S-F!!

    You're right about the stimulation issue. He doesn't watch TV and has no radio. His house is deathly quiet. To me it doesn't seem healthy, but I also need to bear in mind he's not a music fan and never watched TV much in the first place. But it means there's no conversation beyond me.

    He goes up to the local a couple of times a week but I think he goes quite early and as a consequence it's generally empty. I've tried to convince him to go a bit later as it fills but he doesn't seem to.

    I've got a friend who's mum was recently made redundant and she's not quite retirement age. She's looking for part time work and I'm thinking about asking her to go round and be with him a couple of times a week for a couple of hours. Maybe cook tea for him and generally look after a few things around the house. How much should I offer to pay her? £10 ph? Dad's very anxious (and quite bitter) about spending all his hard earned cash on care.

    Thanks for the sanity check! SF is a lonely and confusing place to be........
     
  5. 2jays

    2jays Registered User

    Jun 4, 2010
    11,594
    West Midlands
    the friend sounds ideal. Hopefully she is flexible and compassionate..... Someone with dementia, even in the early stages, isn't always easy to deal with.

    Sell it to dad that he would be helping this woman who needs pin money

    I think £10 per hour sounds ok.... But don't forget tax and NI and now I think there's pension payments if this arrangement is going to be strictly "official"

    The other thing to think about is what happens if she is off sick.... Or doesn't want to continue....

    There is something called direct payments - I know nothing about, apart from what I've read on here.
    Hopefully someone who uses direct payments will give you their knowledge on how it works or even how you get it, when they can.

    xx


    Sent from my iPhone using Talking Point
     
  6. its a struggle

    its a struggle Registered User

    From 2Jays "I think £10 per hour sounds ok.... But don't forget tax and NI and now I think there's pension payments if this arrangement is going to be strictly "official"

    Friends have recently set up a similar arrangement and the 'carer' is self employed, solving those issues apparently.
     
  7. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    51
    Yes - I was hoping she'd register herself as self employed too - then it's her job to do all that stuff! One thing less for me ;)
     

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